Overwhelmed

jrow7 · January 2017

Hello 🙂

My PCP called me this evening and told me I have DCIS (which I was expecting because I researched medical journals like a crazy woman, lol). He said it appears "aggressive" so he sent a note to the Breast Hlth Ctr and asked they see me as soon as possible. Honestly I don't recall much of the conversation. He said he would release the path report to my online chart so I could see it. I've pasted it below. Is it me or does the path say not only DCIS but IDC as well? I feel quite in a daze reading it. 8am can't come soon enough, I'm hoping for a face to face as soon as possible to go over it.

~jen

Left breast, calcifications, stereotactic core biopsy:
· INVASIVE MODERATELY DIFFERENTIATED DUCTAL CARCINOMA, THREE FOCI
MEASURING 0.3 CM IN GREATEST DIMENSION IN THIS LIMITED SPECIMEN.
· LYMPHOVASCULAR INVASION PRESENT.
· EXTENSIVE HIGH NUCLEAR GRADE DUCTAL CARCINOMA IN SITU WITH
COMEDONECROSIS AND ASSOCIATED MICROCALCIFICATIONS.

MICRO: Sections show multiple cores of breast tissue which are involved
by extensive high nuclear grade ductal carcinoma in situ with associated
microcalcifications and comedonecrosis. Within this background are
three foci of invasive moderately differentiated ductal carcinoma
measuring up to 0.3 cm in greatest dimension. Invasive ductal carcinoma
shows a solid nested pattern with no tubule formation, moderate to
marked nuclear pleomorphism, and up to 9 mitoses/10 high power fields.
There are foci of lymphovascular invasion identified, confirmed by
immunohistochemical stain for CD31 performed on block 1A. The presence
of invasive ductal carcinoma is confirmed with immunohistochemical stain
for smooth muscle myosin heavy chain performed on block 1A

Wildflower2015 · January 2017

Hi Jen,

I'm so sorry about your diagnosis. I don't understand what it says either,but there is a member of the community, Barred Owl, who is very helpful and knowledgeable about medical terminology. She does a great job explaining terms that non-medical folks (like me) can understand. Hopefully she will notice your post and respond.

This community is a wonderful source of support. Please keep checking in as you continue through these early days. You will get through this, I promise.

((hugs))

Hopfull2 · January 2017

hi. Sorry for what your going through. Just hang in there deal breaths. This waiting game is the worst. This path report is not even final. You won't get your final path report until after your surgery. It's common to have both dcis and idc. They thought I only had dcis but after my mastectomy I had a 7mm idc mass. Tiny but there. Good luck

Hugs...

AmusingSoprano · January 2017

Lymphovascular invasion is a spread to either blood vessels or lymphatics. It could be microinvasion, so only the tiniest bit - hopefully that is the case. Let us know how you get on.

dtad · January 2017

jrow7....so sorry you have to be here but welcome. I know you will find this forum both comforting and informative.To answer your question, IMO it does seem like you have DCIS and IDC. The beginning of this process is the most difficult. You will most likely be overwhelmed by all the information thrown at you. We are all here for you. Good luck and keep us posted.

BarredOwl · January 2017

Hi jrow7:

I am sorry about your recent diagnosis. It was very shocking to me at first. It is hard to believe, but I felt a lot better after I met with the breast surgeon and had a better understanding of what I was dealing with, and as a plan forward was developed.

I agree that it appears that both IDC ("invasive ducal carcinoma") and DCIS ("ductal carcinoma in situ", a form of "non-invasive" disease) are present. This is very common.

This page from the main site here illustrates the difference between non-invasive DCIS (confined to the interior of the duct) and invasive breast cancer (which has broken through the wall of the duct into surrounding breast tissue):

http://www.breastcancer.org/pictures/types/dcis/dcis_range?utm_medium=OBWidget&utm_source=OB

It could be clearer, but if I am reading the report correctly, it is saying that in terms of size, the largest focus of IDC is quite small at 0.3 cm in greatest dimension (3 mm).

The IDC is said to be "moderately differentiated," a term which typically indicates "intermediate grade" or "Grade 2". Please confirm it with your team. The grade determination is based on there being "no tubule formation, moderate to marked nuclear pleomorphism, and up to 9 mitoses/10 high power fields." For more information about the determination of "histologic grade" for invasive breast cancer using Nottingham Histologic Score ("Elston Grade"), see this page from Johns Hopkins:

http://pathology.jhu.edu/breast/grade.php

The report also mentions: "There are foci of lymphovascular invasion identified." My understanding is that the pathologist looks at the lymph vessels and the blood vessels in the vicinity of tumor for signs of lymphatic invasion (breaking into a nearby lymph vessel) or vascular invasion (breaking into a nearby blood vessel). If they see signs of either of these in the sample, they note "lymphovascular invasion" ("LVI") is "identified" or "present". Here is a brief explanation and illustration from the main site here about LVI:

http://www.breastcancer.org/symptoms/diagnosis/vasc_lymph_inv

"LVI" is an in-breast phenomenon and is not the same thing as lymph node involvement.

If you are located in the United States, it is likely that additional tests may be done on the DCIS to determine estrogen receptor ("ER") status and progesterone receptor ("PR") status. In addition, the IDC will likely be tested to determine ER, PR, and HER2 status. You will probably learn more about these in your consultation at the breast center.

In your next appointment, be sure to ask if the above is the complete pathology report or if there is a longer version available. Also inquire whether any addenda or supplements with ER, PR and HER2 status will be made available in due course.

You will learn what you need to know as you move forward, and will find a lot of information and support here.

General Comment: Microinvasion and "LVI" are distinct:

Please note that jrow's report does not contain the word "microinvasion". However, others may see this word in their pathology reports and should please note that "microinvasion" refers to a specific size of invasive breast cancer, specifically a tumor that size-wise only is "T1mi", where the tumor ≤ 1 mm in greatest dimension. The word "microinvasion" in a pathology report does not mean that lymphovascular invasion ("LVI") is present. These are two totally separate phenomena. Invasion of any size (invasion of the breast tissue surrounding a duct) can be present without LVI (when the cancer breaks into a nearby lymph channel or blood vessel). The pathologist separately notes whether LVI is "present" (or "identified") or is "not present" (or "not identified").

Best,

BarredOwl

jrow7 · January 2017

Thank you everyone for taking a moment to drop in...much appreciated! I had my meeting this afternoon and I am feeling so much better and relieved. Yes I do have both DCIS and IDC but it's quite an early dx. I have a breast MRI scheduled for Monday with a follow-up appointment on Wednesday. We need to wait and see if lumpectomy + radiation or mastectomy. They would like me to have genetic testing since I'm on the younger side - which I'm going to have done because depending on that, it may be a factor in having a bilateral mastectomy - and the fact that we have 3 daughters (and 2 sons). I don't feel I need a second opinion but I am being urged by a few to head into Boston since "that's where the best Dr's are". I have asked for opinions on my current Dr and I have looked up her experience and I feel she is a good match to my personality. I'm comfortable with how we are approaching this. But we shall see....I may cave to the pressure. The hardest part has been saying "I have breast cancer" to my Boss, my coworkers, and friends. (I have a wonderful relationship with my boss & co-workers so that's why I told them.)

So that's it for now....waiting patiently for Monday...feeling much more at ease....and continually reminding myself to focus on God...

Much love to all ~ Jenn

MTwoman · January 2017

Jenn, while your friends/family want "what's best for you" and are encouraging you to go into the city, YOU need to make the decision about who you want to work with. I cannot stress enough to you that your comfort with your providers and your confidence in them is paramount. Urging you to go into the city may be what will make THEM feel better, but I would give that a much lower priority than making YOU feel better. Also, how far away Boston is and how long it takes to get there may be a consideration depending on your type(s) of treatment. At one point, I was working with my team in the small city where I live and really liked going home, or being able to work (great distraction) as much as possible. When I had to go to another state at times, I had to take extra vacation/sick days for travel back and forth and then wasn't sleeping in my own bed at night.

If you feel at ease now, and secure with your team, that is a big plus. If you have any questions that aren't being answered, or believe that a second opinion/additional information could help you or alter your course of treatment, then you should follow those instincts. In my own case, I got a second opinion on the pathology from my lumpectomy which did, in fact, change the course of my treatment pretty dramatically. The great thing is that it sounds as if you have a wonderful network of family, friends and colleagues that care about you and want the very best for you. Good luck and hugs to you as you move forward and make your treatment plan.

jrow7 · January 2017

Hello again...so the result of the breast MRI was another area of concern, which then lead to an US to confirm what they saw and then had an MRI guided biopsy which revealed DCIS at the "noon" position of my left breast in addition to the DCIS and IDC at the 3 o'clock position.

Had blood drawn today for genetic testing, we should know that result sometime next week. Chance is minimal but insurance covered it so why not be extra sure, right?

No chemo before. Surgery is scheduled for 2/13, large lumpectomy, left breast.

BS is going to take the area from noon to 3 out, which will reduce the size of my left breast. She's going to reduce the size of my right breast at the same time - also moving my nipple upwards so that both of my nipples will be at the same location. I begged her to do as much as she can in one operation because I do not want to keep resetting my "healing clock" to deal with this. Praying for clean margins so I can heal and prepare myself for the next step in this battle.

That's about it for now. I'm sticking with my Dr in NH vs Boston - just didn't get the best feeling being down there (too many people).

MTwoman · January 2017

jrow, sorry about the additional DCIS, but glad that you have gotten your team together and settled on a plan. Moving forward is always better than the waiting game. Good luck and let us know how you're doing!

BarredOwl · January 2017

Hi jrow7:

Are you saying that your breast surgeon plans on doing the contralateral reduction procedure herself? Is she trained as a plastic surgeon? I don't have any relevant experience with this question, but I would be wondering whether it may be beneficial to have a plastic surgeon join your team to perform the reduction.

BarredOwl

MinusTwo · January 2017

I agree with BarredOwl. I think a plastic surgeon is important at this point,

gracie22 · January 2017

Totally agree that this is PLASTIC SURGEON territory--do your research and find one with good credentials and reviews and talk to them before the surgery. Do not have a general or breast cancer surgeon attempt a reduction. The plastic surgeon can work with the breast cancer surgeon during the procedure (that is the norm)--the BC surgeon takes care of removing the cancerous tissue and the PS does the rest. If you have to push back the surgery a bit, that is OK.

jrow7 · January 2017

Yes she is trained in PS as well (Oncoplasty). I did meet with a PS as well. The PS did not want to touch my R breast until after chemo and radiation, which would be months down the road (something I am not interested in at all). That's why I went back to the BS and discussed the PS with her.

BarredOwl · February 2017

Hi jrow7:

Please do not hesitate to consult another plastic surgeon. Many members here consulted two or three different plastic surgeons, and found that they have different skill sets and can take quite different approaches regarding timing, etcetera.

Your surgeon's education, residency and fellowship (if I recall correctly) appeared to be that of a Breast Surgeon, not a plastic surgeon. For example, the plastic surgeon I consulted was Board Certified in Plastic Surgery (American Board of Plastic Surgery). His training included an Internship in general surgery; Residency in plastic surgery; and Fellowship in Hand/Microsurgery. He performed plastic surgery as essentially all of his practice.

I note that this page from Johns Hopkins regarding oncoplastic surgery seems to suggest that Plastic Surgeons typically perform the plastic procedures on both breasts:

http://www.hopkinsmedicine.org/breast_center/treatments_services/reconstructive_breast_surgery/oncoplastic_surgery.html

"At the time of your lumpectomy, the surgical oncologist will remove the tumore [sic] and the lymph nodes. The plastic surgeon will perfom a bilateral breast reduction or lift, removing breast tissue from the cancerous breast as well as modifying the normal breast."

In my quick scan of the review article you previously posted, I did not find any information as to who was the lead surgeon on the various aspects of each surgery or whether a plastic surgeon participated or not. Theoretically, these examples may not be her work product at all, she may have only observed or assisted, or a plastic surgeon may have participated.

In any event, if your breast surgeon plans to perform all aspects of your planned surgery and reduction, please be sure to inquire how many oncoplastic procedures she has done as lead surgeon (with no assistance from a plastic surgeon); how many contralateral reductions she has done by herself (with no assistance from a plastic surgeon); and how many of each such procedures she does annually on average and in 2016. Be sure to request photos of the results of her work (as lead surgeon, and without assistance from a plastic surgeon) from the past year (the same procedures you are having), and inquire whether the photos represent typical outcomes or show the optimum result.

With certain types of oncoplastic procedures, if the pathology reveals inadequate margins, re-excision to achieve adequate margins may not be an option, and a mastectomy may be required (conversion to mastectomy). Please be sure to inquire about what would be the next step in the case of inadequate surgical margins, if you have not already done so. In the event that a mastectomy (and reconstruction) were needed, would you still have sought a reduction of the healthy breast?

We are all different. These are just some things that I would be thinking and asking about.

My best wishes to you as you move forward.

BarredOwl

jrow7 · February 2017

The BS spoke again with the PS and now he is saying he would do the lift/reduction on the R breast while BS completes lumpectomy on the L. However we are all waiting on genetics result.

I think I'm giving this page a break for a bit. Just too overwhelmed

BarredOwl · February 2017

Thank you for the update. I vividly remember being extremely stressed while waiting for BRCA test results. Sending good wishes for the best possible test results (negative).

BarredOwl

jrow7 · February 2017

Surgery pushed back until 3/1 so both the BS and PS will be present... Genetics negative

Capemaygal · February 2017

I have learned thru all this mess of mine that you need to rely on what your doctors are telling you. Ask them specific questions and take someone with you to all your appointments during the time that surgery and treatment plans are being made. My boyfriend goes with me and he takes notes.

Keep yourself busy. That works for me as well.

Moderators · February 2017

Dear Capemaygal,

Thanks for reaching out to the community and sharing your tips. We hope that you will stay connected with us and keep posting. We look forward to seeing you on the boards. The Mods

Overwhelmed

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